I’m fully circled in the revolution of the different ways my body is attacking myself. Sometimes I think I have it licked only to find that I have done a complete 360 again from the last point where I was. A complete circle. It appears that with chronic illness and chronic pain and fatigue this is the case. Your symptoms will wax and they will wane. Mine were waning so well that I was feeling like I had a normal life again. Until 2010 when I felt the Mack Truck of Cervical disease, Connective Tissue Disease, Giant Cell Response, and Fibromyalgia slam into my body yet once again.
Those 4 yrs of doing really well, pffttt! Gone! I have come full circle again, right back where I started. And even worse at times it has felt like I have done a 360 all the way back to the beginning by the treatment from doctors and their staff.
I thought that at least I (we, the chronic pain community) has been able to move past that. But not the case. There are still great bumps and humps in the road to treating this disease like all others. And yes folks, Chronic Pain has been in fact declared a disease of it’s own. So those doubting Thomas’ out there; please next time you want to jump on the side of the fence that bolsters your thoughts, or so you think, please jump on a doctors fence and take it up with the person in the know. Or someone like me… a patient… if you dare believe.
Now that we all know why I am here with a blog called FullCircledMe and it being 12 weeks since I had the cervical procedure, an Ablation on May 31st I thought it appropriate to post an update. I have purposely stayed away from posting here on this blog because I did not want this to be my record of progress. Why? Because I was going through some rough times that had I shared what I was feeling both physically from the ablation and the Fibromyalgia symptoms it triggered I’d have quite possibly frightened off prospective ablation patients. I think that we should have objective reporting about these kinds procedures minus all the emotional baggage that just naturally comes from being in pain and uncomfortable. I did not want to drown this blog in all that baggage of mine. When the end result is here I can and will want to share. I either will be in the throes of presenting with pain symptoms again, and the procedure not being a success; or I could write about it without crying… if I waited until the 12 weeks is up.
Or else I’d come to my senses about it. It will be a success and I can celebrate the twelve weeks and write about the time period of the nerves dying off and the pain being exacerbated by the trauma to the nerves involved.
I cannot call the procedure for me a success. It’s really important that we all remember that we are all different and have very different bodies with very different issues. Even if you are being advised by your physician to have an ablation know that your situation and body is very different from my own.
I did not blog about the progress because I did not want to be an influence in any form. Only you & our doctor would know if this is right for you.
Being right for me was an easy answer. Yes! Despite that I will not call it a complete success it was the least invasive procedure I could go through to try to minimize the pain I’m having in my neck, shoulder and arm. I do have some pretty severe numbness on the back of my neck, under my head. And the skin and connective tissue is still 2 months later extremely sore to the touch. But please keep in mind that I have these overlapping conditions of Giant Cell Response, Connective Tissue Disease, &, fibromyalgia which also can be what is causing me this sensitivity to my skin and my muscles still hurting in my neck. The numbness is not something that is awful and I have come to accept the feeling. Brushing my hair is when it bothers me most.
The good news is that I can say that the pain in my left shoulder and arm is much better. As long as I am not negligent about using it, keeping in mind that even my arm and shoulder affects how my neck can feel. I think that any discomfort in my left arm and shoulder is a long goner for the time being. Nerves grow back and when they do I may have the pain return too. But for now and the next months up to even a year after It may seem better. It’s so much better than living on RX pain meds and aspirin. The bad news is that my neck is still a problem I’m not sure what this means and will see the doc to learn what it means to him. From there I will decide what it is I am going to do.
I’ve accepted that this was not a complete success. It bummed me out and I’d be a liar if I said anything different. Had I posted during the 12 week period and just after – my writing would have consisted I’m sure of a list of symptoms, a cry fest, a bitch fest, and even at times my feelings of just giving it all up. When you have to fight just to find a way to be comfortable physically within your own skin it becomes a disillusion straight away.
At times during this 12 week period I would feel too exhausted to fight the fight, mind you this is fighting the doctor’s office for help, any help, even just the appointment to the doctor of my family doctor’s choice that I see. Fighting the insurance company because despite telling them on paper for the last 12 years that my neck issue is not from a car accident but by degeneration they still insist on fighting me at every corner. My doctors notes back me up, yet they still hassle me. The fight also includes apparently one doctor thinking that she is being snubbed because I am seeing another. Mind you, this is all the while being in pain – on a scale of 1 to 10 and I am at 7 or 8. And that is on a not so bad day.
People who think that I and others like me are doing this for drugs or attention, know this: It would be a lot easier by all means to just go to the streets for drugs, and for attention I can think of things that would get me attention with hardly the effort.
This kind of attitude from some of my community is also another reason I have come Full Circle. I thought that I had left behind this archaic thinking and behavior in the mid 1990s. I’ve been doing this for 28 yrs now and have seen so many changes come along the way in the field of Chronic Pain. Sadly though they have not all been to the betterment of the patient, and ironically there are aspects of this field that have waxed and waned just as the symptoms of Chronic Pain.
I’m not sure as I said what my next step will be. I have taken the stand that I am not having full on cervical surgery again. I had a fusion with a titanium plate of three discs in 2000. The surgery was a complete success. I spent a year going through physical therapy and for 10 yrs I had little issues with my neck. I call that a great success. What’s next? I do know that there are less invasive procedures that my doctors and I ave talked about. What is my next option I’m not sure.
Would I advise someone to have an ablation if their doctor was suggesting it? In a heartbeat. For the procedure being as minimally invasive as it is, the recovery time being less involved than with outright surgery I think it’s so worth it. To be honest even if I had not one good results from the procedure I’d still recommend it. In fact should it be suggested to me ever again I will no doubt try it first. I am not saying of course that it is not periled with danger and risks. Of course it is, it’s your spine that is involved. But for the pain relief that can possibly be provided in my mind is so well worth the go.
I’m still fighting the good fight, if I cannot find a fix without full on surgery will the doctor’s keep me functioning and with minimized pain? I don’t know. It’s possible, but with the fears that doctors are living with in prescribing pain medications, even to those patients living daily in pain who have never been a problem, will never be a problem, we still fall through the cracks. And because of those bad apples that have created an environment of fear amongst prescribing doctors people like me who will never become addicted to pain medicine will suffer. I have not in 28 yrs become addicted, why would I now? I have never diverted my medicine to someone else by selling my drugs. I cannot imagine a credible person living with chronic pain selling or even giving their medication away. It would be like cutting their own nose to spite their face. There is not one reason I should not be given an increase in my medication when I say I need it. This is also my fight, and I have to fight it when I am hurting so bad I can hardly hold my head up. The weight of my head becomes an unwelcome burden to my neck. I thought I was done with this. I thought I had proved myself as an honest and true person who lives in pain. That this is not something I sought out.
Going from a mystery illness, and another that no one seems to know much about, to diagnosis, and then a rather remission of sorts was exhilarating. In 2010 it once again all came crashing down on me. And in the mean time the politics of treating chronic pain has changed, and not for the betterment of patients. I had to change doctors again in 2009. I was right back where I started from. And I was in excruciating pain and extremely fatigued. I was again a lost soul trying just to have a life where I could function enough to take care of myself and husband.
Damned if you do, damned if you don’t. My honesty has caused problems for me, since I am a bit of a threat to some providers because of my honesty. I will not make up something to please a doctor. If they do not like what I am saying then possibly looking into the reason I am having my say would be a prudent thing to do. Just maybe a doctor might think of themselves with a bolt of grandiose beliefs about themselves, and contradicting them by actions and words is seen as threatening. It is something else when a doctor will actually listen to what the patient is telling them, maybe then again we could have the hopes of a quicker, accurate, and compassionate treatments may be found.
Maybe. For myself it has been a two-year struggle to be heard.
See? Full Circled Me.